Exploring eHealth Ethics and Multi-Morbidity: Protocol for an Interview and Focus Group Study of Patient and Health Care Provider Views and Experiences of Using Digital Media for Health Purposes

Background eHealth is a broad term referring to the application of information and communication technologies in the health sector, ranging from health records to medical consultations (telemedicine) and multiple forms of health education, support, and tools. By providing increased and anytime access to information, opportunities to exchange experiences with others, and self-management support, eHealth has been heralded as transformational. It has the potential to accelerate the shift from traditional "passive patient" to an informed, engaged, and empowered "patient as partner," equipped to take part in shared decision-making, and take personal responsibility for self-managing their illness. Objective The objective of our study is to examine how people with chronic illness use eHealth in their daily lives, how it affects patient-provider relationships, and the ethical and practical ramifications for patients, providers, and service delivery. Methods This two-phase qualitative study is ongoing. We will purposively sample 60-70 participants in British Columbia, Canada. To be eligible, patient participants have to have arthritis and at least one other chronic health condition; health care providers (HCPs) need a caseload of patients with multi-morbidity (>25%). To date we have recruited 36 participants (18 patients, 18 HCPs). The participants attended 7 focus groups (FGs), 4 with patients and 3 with rehabilitation professionals and physicians. We interviewed 4 HCPs who were unable to attend a FG. In phase 2, we will build on FG findings and conduct 20-24 interviews with equal numbers of patients and HCPs (rehabilitation professionals and physicians). As in the FGs conducted in phase I, the interviews will use a semistructured, but flexible, discussion guide. All discussions are being audiotaped and transcribed verbatim. Constant comparisons and a narrative approach guides the analyses. A relational ethics conceptual lens is being applied to the data to identify emergent ethical issues. Results This study explores ethical issues in eHealth. Our goal is to identify the role of eHealth in the lives of people with multiple chronic health conditions and to explore how eHealth impacts the patient role, self-managing, and the patient-HCP relationship. The ethical lens facilitates a systematic critical analysis of emergent ethical issues for further investigation and pinpoints areas of practice that require interventions as eHealth develops and use increases both within and outside of the clinical setting. Conclusions The potential benefits and burdens of eHealth need to be identified before an ethical framework can be devised.


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Synopsis
The proposal addresses the increasingly important topic of how people with chronic conditions use e-health. The goal is to provide a systematic ethical analysis of emerging issues in e-health regarding its role and impact on chronic illness experience and management. The applicants limit e-health to the technologies used by the public and patients to gather health information and support self-management, specifically, Internet use, decision-making tools and monitoring systems. The proposal will focus on individuals with multi-morbidities, namely inflammatory arthritis plus on or more chronic conditions. This choice of study population is well justified.
Previous research shows that inequities may arise when people with chronic illness are unable to access health information on the internet. Those who were able to access such information identified positive impacts in support for self-management and pathways through care, learning from peers, gaining emotional support, and acquiring advice about treatment options. The question is whether a lack of access equates to a gap in healthcare and self-management support.
The significance of the study is well explained. The study will examine four categories of consumer e-health: internet use, peer-to-peer support or online forums, self-management applications, decision aids. It will also examine the very important issue of how access to e-health affects the patient-provider relationship and how physicians respond to e-health.
The study will explore an ethics framework for e-health using moral reasoning. While drawing on traditional bioethics principles of autonomy, beneficence and justice, the applicants will adopt a relational approach to understand the role and ramifications of e-health. This approach emphasizes context.

Assessment of the proposal 1. Research Approach
The applicants propose a series of 4-5 focus groups with patients and at least 2 with HCPs (recruitment strategies and inclusion criteria for patients and healthcare providers appropriate). These will be supplemented with interviews with approximately 12 patients and 12 HCPs, informed by themes emerging from focus groups.
The analyses will draw on aspects of grounded theory. The applicants will apply a 'social constructionist version' of grounded theory which aims to gain an interpretive understanding of social phenomena. They will attempt to construct theory from the data, and to draft an explanatory framework for future study. They will Assessment/Évaluation: draw on a narrative approach to hear people's storied accounts of their lives and experiences, how they build coherence, and link action with a moral purpose. Recognizing the moral themes of accounts fits with their focus on the ethics of healthcare and their overarching framework of relational ethics.
The applicants clearly describe their methodological approach. The Applicants acknowledge and address potential limitations.

Originality
This is a well-grounded and original piece of research on an important topic. It is based in prior research and with its new ethics focus, will lead to a more substantial application. The proposal is exceptionally well-written, with clear objectives, solid background research and justifications and a well-outlined methodology. While the issue of internet use for health information is not particularly novel, the focus on chronic diseases is. There is also value in unpacking the impact of e-health information on the physician-patient relationship

Applicant(s)
The applicants are well-positioned to carry out the research. is an experienced health Catherine Backman services researcher and Professor of Occupational Science and Occupational Therapy at UBC. Her work to date has focused on the impact of chronic illness and disability on participation in life roles. Backman's turn to ethical inquiry and relational ethics aligns with recurring themes in her research and teaching, and the core tenets of occupational therapy theory, practice, and the integral importance of social environment. is a junior colleague and medical sociologist and qualitative researcher at UBC who has Anne Townsend been hired as a Research Associate by Catherine Backman. Her research addresses the social, ethical, clinical and health policy implications of chronic illness and emphasizes the moral dimensions of patient-provider relationships, self-management and consulting. Anne Townsend has been trained in health ethics.
Both Drs Backman and Townsend have demonstrated significant publication outputs relative to career stage. Their partnership has grown from a series of investigations on the impact of chronic illness on help-seeking and participation in everyday activity, where a number of ethical questions have arisen. The collaboration as it matures and continues has the potential to result in highly impactful research. Canadian bioethicist and researcher at UBC. It is unlikely that adequate mentoring can be provided with a very minimal commitment from Prof. MacDonald.

Impact of the Research
The research will contribute to the currently poor understanding of the role of e-health in managing multi-morbidity from patient and HCP perspectives. E-health has been hailed as a catalyst for positive and sweeping improvements but there is only provisional empirical evidence on how consumers engage with e-health and conflicting evidence about its impact on patient-provider relationships. Focusing on experiences of multi-morbidity, to illuminate issues of use and need, this study will identify and analyze emerging ethical issues of e-health domains for self-management and patient provider relationships. The goal here is to inform a larger research project on this exceptionally important topic.
The applicants have outlined a knowledge translation strategy appropriate to the scope of project. Support from knowledge users and HCPs as collaborators and in letters add value to proposed research and enhance potential impact.

Budget
I would like to see the budget increased to support 2 full years of funding. The proposal looks at the use of internet by persons with arthritis plus an additional condition to understand how they use the internet in the information-gathering, support, and self-management, how this affects their relationship with their providers, and identify the ethical issues involved in patient-driven internet use.
They have selected multi-ailment persons with arthritis because this is who they already work with, because of the prevalence of arthritis +, and because research on ehealth has primarily focused on single ailment. Approach.
They are working within relational ethics; examining male-female differences; using focus groups and interviews. There are very standard procedures and may not get at anything particular unique about ehealth. It might have been more impressive if they looked at the novel technology of ehealth with methods more suited to understanding what "being on the internet" is like. There is work in folklore and phenomenology of this kind that has not been taken up here. Originality.
This does not strike me as highly original. There is a lot of emerging work on multi-diagnosis, and while there is not a lot of ethics work in this area, the relational framework would seem to be the obvious way to go, so this doesn't offer any special methodological or analytic value beyond what is already emerging. Applicants.
Well-integrated team with considerable research expertise on the subject population. The PI is highly decorated as she makes her move into ethics. However, Townsend, the proposed ethics mentor, is not actually trained in ethics and does not have a substantial research record in that area. In addition, she has never served as a supervisor even for an MA student. This weakness in the ethics side likely explains the problems I identify in the approach Impact This is pretty weak. They argue that the value of ehealth may not be realized because it decreases autonomy and damages the patient-provider relationship. They say they will provide better contextual understanding, but there is not much novel thinking about how a relational framework improves ability to grapple with complexity of multi-ailment ehealth use.